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Conquer Chiari has an
active program of awarding Research Grants and organizing Conferences in
support of the Goals and Objectives identified in our Research Agenda.
Research Grants:
Ongoing, Completed
Research Conferences
Conquer Chiari Research Agenda
The Importance of Research
Ongoing Research Funded By Conquer Chiari -
Total Active Research
Projects = $ 642,600
Total Completed Research
= $ 320,000
Total Research Funded To Date = $ 962,600
Conquer Chiari Patient Database
A $125,000 project, administered by Conquer Chiari itself, to create a
web based, secure database of demographic and health related
information about Chiari patients. Patients will enter their own data
on topics ranging from diagnostic history, to surgical history, to the
impact Chiari has had on their lifestyle, all to help answer fundamental
questions about Chiari. The database will be used : 1) as a
source of potential Chiari patients who might be interested in participating
in research studies 2) for Conquer Chiari to identify potential areas of
research 3) for Conquer Chiari to perform internal research 4) for
external researchers to perform research. The database will be
made freely available to qualified researchers for approved projects.
The database will be tested in the summer of 2011 and will hopefully be
launched before the end of 2011.
Cellular and Molecular Processes Affecting Posterior Fossa Volume (Phase
III)
A 3 year, $300,000 grant to Dr. Georgy Koentges to continue his
groundbreaking work in understanding how and why the posterior fossa in
classical Chiari is undersized and abnormal. Dr. Koentges' team has
made tremendous strides in identifying the underlying mechanisms involved in
the development of the bony structures that are affected in classical
Chiari. With this project, his team hopes to not only fully explain
those processes, but also to identify a small number of candidate genes that
may be responsible. Identification of such genes would be a major
advance, and would enable human geneticists to advance their work in
identifying genes involved with Chiari I.
Cognitive Interventions in Children with Chiari Malformation Type 1
A $75,000 research grant to Dr. Frim and his team at the University of
Chicago to extend their previous work investigating the cognitive impact of
Chiari. The project will investigate the effects of two types of
cognitive interventive therapies designed to improve working memory and
attention (one computer based and one based on more traditional face-to-face
therapy) on neurocognitive performances of children diagnosed with Chiari
malformation type 1. Their hypothesis is that CM1 patients with below
average executive function and memory will show improvement in those
functions after one or both of the intervention. It is hoped that this
project will serve to validate the hypothesis and provide the basis for a
larger, multi-center NIH funded study.
Physiology-based Quantitative Assessment of CSF Flow Obstruction at the
Foramen Magnum in Patients with Chiari I Malformation: Preliminary Study
A $30,000 research grant awarded to Dr. Bhadelia at Beth Israel
Deaconess Medical Center for a pilot study to quantitatively assess the
degree of CSF flow obstruction at the foramen magnum in patients with Chiari
I malformation (CM) using fast CSF flow imaging with MRI and physiological
challenges such as Valsalva maneuver. The long term goal of this work
is to provide quantitative data to clinicians to help guide diagnostic and
surgical decisions.
Dynamic MRI and Quantitative MR CSF Flow Studies in Chiari I Malformations
A $50,000 research grant to the University of Michigan (Dr. Bapuraj) to
study the effect of neck position on tonsillar crowding and CSF flow in
children with Chiari. While many people believe that neck flexion and
especially extension negatively impacts Chiari, this study will determine
whether this is true and provide quantitative data, which may be valuable in
evaluating patients with mild or sporadic symptoms.
Characterization of Chiari Clinical
Subtypes by Expression Analysis
A $54,000 grant to Dr. Simon Gregory,
a geneticist at Duke University, to perform genetic analysis on pediatric
Chiari patients undergoing surgery, in order to identify clinical
sub-groups. Dr. Gregory will examine blood and tissue samples from the
patients and correlate the genetic expression(s) with clinical indicators,
such as skull dimensions and the presence of a syrinx. The Conquer Chiari
Research Conference in 2008 highlighted the identification of specific
sub-groups of Chiari patients as critical to improving treatments and
outcomes, especially in children.
Chiari Symptom Profile
A $3,000 grant to Dr. Diane Mueller of the University of Missouri to
develop a statistically validated measure of Chiari symptoms. Such a
tool will be vital in advancing the clinical care of Chiari and enabling
more scientifically sound research. Note: Since Dr. Mueller is
on the Board of Directors of Conquer Chiari, she is not personally taking
any funds associated with this project, but rather is volunteering her time
and expertise to oversee it.
Prospective Evaluation of Release of Tethered Spinal Cord in Patients with
Chiari I Malformation, Syringomyelia, or Scoliosis
A two-year clinical grant to Dr. John
Oro, at the Chiari Care Center, to study the effects of tethered cord
release surgery in patients with clinical signs and symptoms of tethered
cord and Chiari and/or syringomyelia. The relationship between tethered
cord and Chiari is controversial as is the treatment of patients with
indications of both. This well structured, prospective research study
should provide insight into the connection between tethered cord and Chiari
and how best to treat such patients.
Completed Research
MR
Measurement of CSF Wave Speed, Distribution of CSF Velocity and Pressure,
Longitudinal
Impedance, and Skull Base Geometry in Chiari Patients
A $120,000 research grant to a collaboration of researchers, led by Dr.
Loth at the University of Akron, to look for
new, objective indicators of symptomatic Chiari utilizing hydrodynamic
parameters. Dr. Loth's group used advanced MRI and engineering
techniques to measure 3 different hydrodynamic parameters in symptomatic
Chiari patients, asymptomatic Chiari patients, and healthy controls.
Their work produced strong enough preliminary results that
Dr. Loth was awarded a $500,000 NIH grant to continue and expand this
line of research, with the goal being to develop a simple, objective,
quantifiable test for symptomatic Chiari.
Cognitive Function in Chiari
Malformation
A $75,000 grant awarded to Dr.
David Frim, at the University of Chicago, to address one of the most
pressing questions Chiari patients have: Does Chiari affect thinking,
memory, and concentration? Dr. Frim and his team utilized
neuropsychological testing on both children and adults and found that while
overall intelligence was normal, there was a specific, identifiable pattern
of weakness in certain types of verbal memory and executive function.
In the children, these weaknesses improved significantly after decompression
surgery, but with adults not as much. This type of research is very
expensive and a more subjects need to be evaluated to further define and
strengthen their findings.
Molecular Neural Crest-mesoderm
Interactions and Control Networks Affected in Chiari (Phase II)
A $75,000 grant to extend the work of
Dr. Koentges in identifying the regulatory regions (CRM) directing the gene
expressions in the development of the cranial base and neck regions.
Dr. Koentges used advanced cell fate mapping techniques to study abnormal
skull base development as seen with Chiari His work was very well
received at the 2010 Conquer Chiari research conference and holds
significant implications for further research. Dr. Koentges is
currently working on a proposal for Phase III of this exciting project..
Microarray-based discovery of genes active in post-otic neural crest at
critical stages and places of head morphogenesis affected in Chiari I/ II
(Phase 1)
A $50,000 research grant awarded to Dr. Georgy Koentges to employ a
mouse model to identify what genes are active at critical stages of
embryological development which are believed to correspond to when the
defects associated with Chiari occur. According to Dr. Koentges, “As a
direct results of this grant, our investigations into PONC cells has lead to
the establishment of the molecular development of the tissues implicated in
the variety of symptoms of Chiari.”
RESEARCH CONFERENCES
Conquer Chiari Research
Conference 2010: New Developments & Controversies (November 2010)
The third bi-annual research
conference organized by Conquer Chiari again drew over 40 of the top
neurosurgeons and Chiari researchers in the world to discuss the latest
advances and many controversies surrounding diagnosis and treatment. A
web archive of the presentations is available here:
Conquer Chiari Research Conference 2010
Chiari Malformation:
State of the Research & New Directions (November 2008):
A two day professional research
conference, sponsored by the National Institute of Neurological Disorders
and Stroke (NINDS), which brought together the top physicians and
researchers in the field in order to establish the current state of
knowledge regarding Chiari malformation, discuss recent developments in
Chiari research, and develop research recommendations to advance the state
of knowledge and care for Chiari malformation. The meeting presentations breakout working group
sessions on: Definition & Pathophysiology, Symptoms & Diagnostic
Criteria, Engineering & Imaging Techniques, Treatment, Pediatric Issues, and
Related Conditions.
A video web archive of the
presentations is available for viewing here:
Chiari Conference 2008
UIC/Conquer Chiari Research
Symposium - 2007
The UIC/Conquer Chiari Research
Symposium was held on June 2nd at the University of Illinois-Chicago.
The event brought together top neurosurgeons and researchers from around the
world to present their work and exchange ideas. Each presentation was
recorded and is available via archived webcast (please note requirements
below):
Research Symposium 2007 Webcast
Note: There are two pages of presentations (19 total)
Requirements for viewing webcast:
> Microsoft® Windows 2000,
Windows XP,
Windows 2003
> Display resolution of 1024 x 768 pixels or greater
> Windows-compatible sound card
> Microsoft Internet Explorer 6.0 SP1 or greater
> Microsoft Windows Media® Player 9.0 or greater
> Broadband Internet connection (256 Kbps
and above)
If you don't have a broadband
connection, most (if not all) public libraries have broadband internet
access. Also note that some network systems will restrict access to
streaming video.
Research Agenda
Conquer Chiari has developed, and
is actively promoting, the following Research Agenda:
Conquer Chiari Research Agenda: A Roadmap
For Success
Goal #1: Reduce the
average time to an accurate diagnosis to less than 2 years from time of
first symptoms.
Objectives:
·
Develop a standard, simple, objective definition and test of symptomatic
Chiari
·
Enable the introduction of new technologies, such as inexpensive, portable
imaging, which will reduce the barriers to diagnosis
Goal #2: Develop an
effective, widely adopted, and minimally traumatic standard of care.
Objectives:
·
Design, and encourage the adoption of, a standard outcome measure, such that
the results from different studies can be compared and combined
·
Establish whether the surgical variations that currently exist have a
significant effect on long-term patient outcomes, and further develop a
standardized surgical approach
·
Encourage the development of minimally invasive surgical techniques
·
Pursue non-surgical treatment approaches which don't just address symptoms,
but are targeted at the core problem(s)
Goal #3: Minimize the
impact that Chiari has on the quality of life of patients.
Objectives:
·
Develop, and encourage the adoption of, a Chiari Impact Measure, which takes
into account patient focused issues such as career, family, economics,
recreation, and socialization
·
Understand, and develop treatments for, the neuropsychological effects of
Chiari, including both cognitive and emotional manifestations
·
Develop widely accepted protocols for physical, occupational, and other
types of therapies designed to maximize functional capabilities
·
Enable the development of innovative technologies and treatments targeted at
the neuropathic pain and loss of function associated with Chiari
Goal #4: Understand the
pathophysiology, natural history, and epidemiological characteristics of
Chiari.
Objectives:
·
Establish, with reasonable accuracy, the incidence and prevalence of Chiari
and Chiari related syringomyelia
·
Characterize, and quantify, the Chiari experience, such as average age of
diagnosis, time to diagnosis, number of doctors seen, major symptoms, etc.
·
Develop a sound theoretical model for the pathophsyiology of Chiari, which
explains how symptoms develop, and will enable predictions about who needs
surgery, who will develop syringomyelia, etc.
·
Identify and characterize the genetic basis of Chiari
The Importance Of Research
While much can be accomplished
through education and awareness, medical and scientific advances are what
will be needed to truly improve the outcomes of patients and to Conquer
Chiari once and for all. Today, Chiari and syringomyelia are poorly
understood - from causes to symptoms to treatments - and patients pay the price
for this lack of knowledge. Imagine a world where Chiari is no big
deal....A Vision For The
Future
To make this vision a reality the
Chiari community needs to become more active in funding research. Each
research project costs a minimum of $50,000 per year,
If you are interested in helping to fund exciting research which can change
people's lives, you may specify that your
donation be used for Research.
If you do this, 100% of your donation will be applied to Research. |